A Review of ME specialist provision on the NHS

Context

Just a quick summary on my ME onset for context. It started with a sudden onset in October 2022 and I’ve not felt the same since, I was able to get back to work after what felt like a nasty virus for after few weeks, but since then it’s been a gradual decline during which I had good days and bad days akin to the stock market where you would expect growth over the long term and the occasional dip or correction. Like that but downwards all the way down. Along the way I gave up social things, exercise, family time, personal hygiene, friends, going out at all, and ultimately dropped everything that wasn’t sleeping/resting and working. It was gradual and then it was rapid. In July 2025 I had to stop work. I was being late for meetings, taking naps over lunch, starting later and later. I had stopped being good. Felt awful and faked being well on Teams and cried between calls.

I’ll skip the phase of changing jobs thinking it was burnout or a bad manager (twice), the countless GP appointments, multiple blood tests, and being pushed towards antidepressants along the way and jump right to seeing my NHS ME specialist.

Session One

I had my first session with an ME clinic in December 2025. It was about an hour long and was effectively a Q&A session asking typical questions on sleep, pain, physical activity, cognitive challenges.

The session was by a remote video call using some proprietary video call app via a browser. My iPad handled this fine.

The session also covered my diet as I mentioned it (making one meal a day, largely microwave or air fryer only). Also mentioned exercise but not from a GET (this is like sugar to a diabetic) perspective but from little movements as not to de-condition. We covered a bit of MCAS too as I mentioned a bunch of systems that aligned with this and some treatment options there.

I was offered, or it was at least suggested to have a break or do shorter sessions, but I said I would rather complete it and then rest - a suffer once than twice approach as I honestly cannot cope with more calls than necessary, previous work calls in October were causing PEM lasting 3-4 days. Listening to comprehend is incredibly difficult for me now.

The Specialist was an occupational health therapist by trade and came across as friendly, compassionate and understanding. They re-confirmed my diagnosis at the end of the call in addition to my GP’s initial diagnosis and said they would write to my GP (this took a week) and encouraged sleep/pain management (medicine) but could not prescribe as they are only therapeutic.

They, when asked, suggested there is no clear criteria for mild/moderate/severe/very severe, but I was towards the severe end although subjective, yet the NICE guidelines, ME association, and others suggest these levels are well documented so this was a bit odd.

It was very odd and maddening that as my specialist is across county lines (there is not one in my county) they could not access my NHS record - hence all the questions I suppose. Additionally it took 14 weeks for the appointment although I had been told it could be 26 weeks. This is a long wait and could easily be mitigated with a small handbook and a few videos sent immediately with the survey I was sent and the intro session could be much shorter.

The survey papers were sent to me by post and arrived about a month before my session, but it noted I could ask for a digital copy instead - I did this as the last paperwork I had to do for work cost me an entire week after 45 minutes of effort - the digital copies were not made for filling in by a human, let alone someone with physical and cognitive issues. A switch to a proper survey app would be more accessible than some word templates with no clickable/formatted response areas. Again funding the NHS properly and using GDS’s form builders would help.

Follow ups

The session led to a follow up a month later and I had homework to watch videos from their website (these were also on YouTube and produced in a very accessible way for people with ME) this was instead of attending an online session to go over ME largely due to being seen as towards the severe end and the group session being too much for me. Primary lesson from the videos was about avoiding boom/bust cycle. As an example, it is better to walk 1km a day than walk 5km in one go and not be able to do anything for a week or two.  I’ve had a further follow up when I had more homework to document my activities for 4 weeks. Main lesson here was that it showed a period of a crash followed by some stability (it didn’t last). It also became apparent that listening to podcasts or the TV albeit feeling restful wasn’t true rest and I’ve been tasked with trying complete mindful rest - meditation type breathing exercises - although these can be guided it’s been hard as I’ve been in a crash again.

My subsequent sessions have all been around 10 minutes , I can sense they will end soon as there is nothing they can do for me physically, emotionally nor medically. I imagine I will move to a request an appointment model soon and free up the time for others on the waiting list.

Final Summary

If you know nothing about ME then these sessions might be useful, but I guess manage your expectations if you think you will get treatments and will see marked improvement. But this is no fault of my specialist and the clinic. Just not enough research, progress, or funding.

My Specialist has been helpful and i have learned a couple of things. I believe the letter back to my GP was substantial in getting approval for my insurance via my employer.

I continue to try to pace and live within my energy envelope, like trying to make a phone on 20% last the entire day, but anything, even the most nonsensical or minor thing can kill the phone and in my reality ruin you for days on end. I am a shell of the man I was.

This post has taken around 4 months to put together.